On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Monday, August 4, 2014

Groundhog Day

We are back in Denver. We arrived yesterday after a long journey and Phoebe had her bone marrow, spinal fluid, blood and heart tested today. 

Her spinal fluid is clear and her heart is healthy. Her blood work looks good. 

The next piece of news ... I don't even know what to say about the next piece of news. 

The disease in Phoebe's bone marrow is at 3%. This is down from 35-40% without treatment, after going from 85% to zero with very little treatment a couple of weeks ago. This is a disease that we have watched Phoebe fight for close to 4 years. A disease that we know to be aggressive, that we have seen rage out of control in the past, that we have seen grow inside her belly, literally grow, and cause acute kidney failure, a disease that we know is there. This place that we are in is as hopeful as it is terrifying. 

Right now, Phoebe doesn't qualify for the study. This is despite the fact that just last week she had two bone marrow tests done, one on Tuesday and another on Thursday that showed 35% disease. The level of disease didn't increase from Tuesday to Thursday which left Phoebe's doctors confused, and now, I am sure they are more so. 

I feel like we are stuck in a really bad version of that not so good movie, Groundhog Day. 

We have a lot of questions and no one seems to have answers. 

But ... Phoebe is great. We arrived last night and she promptly got to jumping on the bed with Mae. She has thankfully decided that she likes the hospital here and the people in it which makes hospital visits much easier. She is eating well, playing hard, and laughing often. She is a picture of health. 

We are not sure of the plan. We hope to hear more tomorrow. We are confused, frustrated, but also thankful that this disease is not raging out of control. We are thankful for Phoebe and her many tricks, but are anxious to have bone marrow results that show no disease and to have a treatment that will take us there. 

In the meantime, it looks like we have a few days off of hospital life and some exploring to do. 

“I love to see a young girl go out and grab the world by the lapels. Life's a bitch. You've got to go out and kick ass.”
Maya Angelou 

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